Sex and Cerebral Palsy – Karin

LEAH: Welcome to Good Girls Talk About Sex. I am sex and intimacy coach, Leah Carey, and this is a place to share conversations with all sorts of women about their experience of sexuality. These are unfiltered conversations between adult women talking about sex. If anything about the previous sentence offends you, turn back now! And if you’re looking for a trigger warning, you’re not going to get it from me. I believe that you are stronger than the trauma you have experienced. I have faith in your ability to deal with things that upset you. Sound good? Let’s start the show!

[MUSIC]

LEAH: Hey friends. Today, I’m speaking with Karin, a woman I’ve been following on Instagram for quite a while. I periodically reach out to people who have public platforms and invite them on the show. And not only did Karin say yes, she offered to use her real name. The fantastic thing about this is she mentions how she uses Instagram as self-care and for advocacy during our conversation and you can be looking at her feed while she’s talking. On Instagram, she’s @khitselberger, K-H-I-T-S-E-L-B-E-R-G-E-R, and that link is in the Show Notes.

Karin has cerebral palsy and uses a wheelchair. For many years, she bought into the idea that as a disabled person, she must be non-sexual and it would be impossible for someone to find her attractive. At age 23, she discovered that none of that is true. We talk about how disabled people are frequently both fetishized and infantilized when it comes to sex, the ridiculousness of social media rules around sexuality, and the logistics when two disabled people want to be intimate.

Karin is a 30-year-old cisgender female. She describes herself as white, queer, monogamous, and dating. She has cerebral palsy and a mental health disability and has previously had an eating disorder. She describes her body as fat. I am so pleased to introduce Karin!

Karin, I am really excited to have you here. We have had a little bit of contact on Instagram and I’ve just been really taken with your feed and how you present issues around body positivity and ableism and all of this. And so, I’m so excited that you said yes to doing an interview. Thank you for being here.

KARIN: Yeah. No. I’m really excited. I feel like for me, coming from a space of a lot of body hate, doing a lot of work around body positivity or even body neutrality has been really important. And just portraying this idea that disabled people are in fact human and we’re complex and we have relationships and sex lives and desires and all of the above and more is really important because people have this idea that we’re eternal children. And I’m 30 years old and I’m like, “I’m not a child. No.”

[LAUGHTER]

LEAH: Yeah. I really want to interview a broad variety of people, so we get lots of different points of view. It is especially important to me that we present people with disabilities as human sexual people because like you said, so often people with disabilities are seen as completely asexual or non-sexual. And while it may be true for some people, it is definitely not true for everybody.

KARIN: Yeah. I identify as demisexual, so for me, I have to have a really strong relationship with someone to feel comfortable in that physical relationship with them. But I think disabled people are either somebody’s fetish, something somebody wants to “try out” or we are just seen as I like how you said non-sexual versus asexual because I think asexual is obviously a valid sexual identity, but disabled people aren’t even given that identity to say like, “No. This is my choice not to engage in this.” It’s more just assumed that we don’t or even further than that we don’t, that we shouldn’t.

LEAH: Yeah. There are so much that I want to talk to you about, so let’s dive in. And the first place that I start every interview is what is your first memory of sexual pleasure?

KARIN: I don’t actually know, probably when I was in my 20s and started dating my first boyfriend. And we would talk on the phone and stuff and just realizing that I could be attracted to somebody and have those feelings for somebody. And even more than my feelings, that somebody could have those feelings back towards me was very much a sexual awakening so to speak of you’re allowed to want these things. You and your body exactly as you are, are allowed to want these things. You don’t have to be thinner or more able bodied or have straighter teeth. I can name a million things.

But I think because my boyfriend at the time was also disabled and we had a bicontinental relationship, so I can get into that a little more. So, we would just Skype all the time and we would go from talking about disability justice to the fact that he thought I was the prettiest girl in the world or whatever the conversation du jour was.

[LAUGHTER]

KARIN: I can be both fully me in my activist-y way with him, but also be a sexual person. And I never dated anyone before I dated him and I had never been in a relationship. My first kiss was in a British train station. It was epic.

[LAUGHTER]

KARIN: Our whole relationship was definitely a movie. The end of our relationship was really tragic for me in the sense that we broke up for various reasons. And then, six weeks later, he died.

LEAH: Oh my god.

KARIN: And that informed my feelings about relationships going forward for a long time. This was about five years ago that this happened, but it’s only now that I’ve started to explore dating again because there was a very long time where I was just like, “No. This was my person and I get one.” He saw me as a person, but I can’t see other people seeing me that way. I really struggled with that, but I credit him with all the passion and body positivity stuff I do on Instagram came out of a conversation I had with him where I was whining as I always do about the injustices of the world.

[LAUGHTER]

KARIN: And I was saying that, “I didn’t like that I didn’t see people who looked like me in media.” And he goes, “You could change that.” And then, when he died, I really wanted to hold onto how he made me feel about myself as somebody who was beautiful and desirable and could be wanted in that way. And I wanted to present to the world that disabled doesn’t mean ugly and it doesn’t mean undesirable.

My hashtag is #DisabledIsNotABadThing and that relates to relationships too. He taught me all my good quips and clap backs to things people would ask me in clubs. I’m in a wheelchair. And so, a lot of people when they first meet someone in a wheelchair, their first question is, “Can you have sex?” My response to that now by the way is, “Well, you’ll never find out.”

[LAUGHTER]

LEAH: I love it.

KARIN: He used to joke about these things or we used to have a joke that if anyone stared at us in public or called us adorable, we’d just have to start making out and make them really uncomfortable.

LEAH: I love it.

[LAUGHTER]

KARIN: I mean it. It’s this idea that disabled people can’t or don’t experience that part of life and they do. And for a long time, I shut myself off to it I think largely because I thought no one could ever want me in that way because that’s what society taught me is that I wasn’t desirable in that way.

LEAH: So, you have cerebral palsy. Correct?

KARIN: Yes.

LEAH: And that’s a condition that you’ve had since you were born.

KARIN: Yes.

LEAH: Did you do any self-exploration or getting to know your own body when you were younger?

KARIN: Not really. Not until after I was in a relationship and realized that it was okay for me to have these feelings and it was totally normal and healthy. And then, I went from there. But I think for a long time, not really how I grew up because it wasn’t necessarily taboo in my household, but then I went to college and I got really involved in evangelical Christianity for a while. I still identify as Christian, but as a much more liberal queer-affirming, body-affirming, disability-affirming. I always say I believe in Jesus. I don’t necessarily believe in a lot of churches.

[LAUGHTER]

KARIN: But I do believe in this idea that we’re meant to love people where they’re at. That’s what my faith looks like to me is loving people where they’re at. But I think part of it being drawn to that was, “Okay. These are people who are not exploring that part of themselves.” So, I don’t have to feel weird that I don’t feel like anyone could ever want me in that way because I can just say, “This is a choice.” And even now, I’ m very careful when I talk about how I identify in the ace spectrum because I originally just thought I was purely asexual. And then, I realized, “No. I’m just afraid that no one’s ever going to want to be with me,” but it’s different.

LEAH: That’s a huge difference. Yeah.

KARIN: I, for example, cannot get dressed myself. I cannot shower myself. I cannot go to the bathroom myself, so all of those things. Essentially, the person who helped me with them starts out as a stranger and on day one, they see me naked. So, there are certain things that are very intimate to other people that are not intimate to me, but then there are other things that are extremely intimate to me that are not as intimate to other people. Kissing is extremely intimate to me because there’s a lot of choice in that. For me, there are not necessarily a lot choice in do you get to see me naked? I joke with my friends that if we’re friends long enough, you’ll see me naked.

[LAUGHTER]

KARIN: You’re going to end up helping me at some point get dressed or whatever. It is what it is. So, that was never part of intimacy for me in that way. Whereas physical contact was in a different way. And so, the reason I need a very strong emotional connection to someone is because I want to feel like I have a lot of agency in the decision and a lot of choice. I know it’s incredibly vulnerable for anybody, but if you’re being intimate with someone, you literally cannot get up and get out of bed. You have to trust that person with your literal life. And I think that that’s really hard to do and I think that’s why.

And even my first relationship, we dated long distance for six months before we ever met in person. So, by the time I met him, I was like, “Yeah. I want to kiss you. Yeah. I want to be with you” because I knew a lot about him and we knew each other very well. And as a person, he was attractive to me. And I think I still experience that. So, I like long distance dating. A lot of people don’t like it. I like it because I get my little barrier between me and the other person and I get to know them from afar. It’s weird. Yeah. I’m not real good at whenever people want to meet up at first. I’m like, “No.”

[LAUGHTER]

KARIN: Like, “No.” I say it nicely, but I’m just like, “Too soon. Sorry.”

LEAH: Yeah. That makes a ton of sense. So, you said that your first kiss was on the train tracks was epic. Tell me about it.

[LAUGHTER]

KARIN: Yeah. It was in a British train station. So, I went to postgrad in Leeds. And when I was applying to school, I met my would become boyfriend on the Internet and he was also disabled and also going to school where I eventually went to school.

LEAH: May I ask what his disability was?

KARIN: He had cerebral palsy as well.

LEAH: Okay.

KARIN: And we just hit it off. It started as me picking his brain about like, “Okay. You’ve lived in England your whole life. Can I actually do this? I’m a spoiled American who has certain laws that protect me as a disabled person. What the heck is it like in another country?

[LAUGHTER]

KARIN: And it just blossomed from there into honestly the first day we talked, we talked for hours and I didn’t think he would ever text me again. And then, he did the next day and I felt myself have butterflies. And I was just like, “I really like this person.” And then, one day, we’re just talking and he was like, “I like you.” And I was like, “I like you too.” And he was like, “No. I like you.”

[LAUGHTER]

KARIN: I was like, “Oh.” And then, we started dating. It took me a really long time to tell people that we were dating because I had this fear that they wouldn’t think our relationship was real because we had never met. But I remember I told my family and they had mixed reactions. And then, he sent me flowers for our one-month anniversary and I just remember everyone being like, “Well, I guess this is a real thing.”

[LAUGHTER]

KARIN: Yeah. It was just like, “Okay. We accept this now.” It was really cool because I felt like I didn’t have to explain myself to him. I could just be myself and explore what it meant for me to be in a romantic relationship like an adult romantic relationship with someone because didn’t have to explain to him my body works differently than most people’s because his did too. So, it wasn’t weird. It was just very normal.

I’ll never forget that when I get to school, I was meeting with one of my professors. And I guess she knew him, but she didn’t know that we were dating. And she was like, “I know somebody that you need to meet because you guys would get along and have some fun.”

[LAUGHTER]

KARIN: And then, I had a picture of us on my phone and my phone was on the table. And she looks down and goes, “How do you know him?” And I’m like, “Oh, he’s my boyfriend.”

[LAUGHTER]

KARIN: And she’s like, “Of course. You two are dating.”

[LAUGHTER]

KARIN: And I was like, “Are we that similar?” It was really funny. But it was epic because I was 23 and I had never been kissed. And I felt like I had waited for this my whole life. I thought it would never happen. And then, he came to meet me in the train station when I went from London to Northern England. He came to me and we kissed. And it was just epic because I was like, “I have no idea what I’m doing.”

[LAUGHTER]

KARIN: It was awkward, but it was also epic because I just really cared about this person. And it didn’t matter that I was awkward because I remember asking him if meeting me was everything he expected. And he was like, “You’re even more awesome in person.” Yeah. Whenever I talk about him it makes me laugh, but then it also is hard because I miss him tremendously as a person.

Even though I don’t know that we would have still been together because we did have this very strong distance between us in the sense that I’m American and he was from Britain. It would have been hard for each of us to live in each other’s country long term because of disability immigration laws and things like that. But I know he still would have been my friend. He still would have been an important part of my life. It just makes me sad that he’s not here for me to be sarcastic with and joke around with.

[LAUGHTER]

KARIN: But I felt like he was one of the first at least men who saw me as a woman.

[MUSIC]

LEAH: Are you aching to explore new vistas of your sexuality, but you’re not quite sure how to proceed? Are you wondering if your desires are normal? Are you afraid you’ll have to blow up your existing relationship to have the kind of sex you want? Or maybe you’re hearing these conversations every week and thinking, “I understand what she’s talking about. I just don’t know how to do it in my life?”

Well, that’s where personalized sex and intimacy coaching comes in. When you work with me, I promise to help you feel safe exploring your sexuality. I promise that your sexuality is not shameful and together we’ll help you see yourself, your needs, and your desires without judgment. Now I’m not going to tell you what you should do or feed you answers. That’s not what coaching is about.

Instead, I’m going to walk with you in the process of discovering what’s right for you in a way that respects your emotional needs, your boundaries, and the pace that’s right for your nervous system because going too fast can send you into shutdown while going too slow can be infuriating and exhausting. The goal is to find the right pace for you.

I work with clients who are motivated to explore many different areas of sexuality including things like learning how to talk about your sexual desires with current or future partners, learning to date after a long time out of the dating pool, questioning if you might be queer, challenging body image insecurity in sexual relationships, dipping your toes into BDSM or consensual non-monogamy, exploring sexuality for later in life virgins, recovering from infidelity, and so much more.

I believe this work is deeply important and should be available to every woman regardless of your financial situation. That is why I now offer variable pricing. Whether you’re experiencing financial challenges, are financially stable or have some extra to pay it forward, there’s an option for you. And I give the same level of care and support to you regardless of the pricing level you choose. For more information and to schedule a discovery call, visit www.leahcarey.com/coaching. That’s leahcarey.com/coaching. Now, let’s get back to the conversation.

[MUSIC]

KARIN: People would say to me things like, “Well, I can say this in front of you because you’re not really a girl,” which really means, “You’re not a girl I would fuck.” Let’s just be blunt. I think that when I was in a relationship, it was real to me because all these things I never let myself want. Marriage and kids and things like that were suddenly on the table. And I was like, “Wait. I can have that too?”

And then, losing him the way I did, I shut that part of me off again. And then, I realized probably about two years ago that that was still something that I really wanted and that I had to figure out what I wanted and what was important to me and all those things. And that’s when my own journey of self-discovery happened.

And also, when we’re dating was when I realized that I wasn’t completely straight. I was going out with some friends one night and we were video chatting. And he made a joke to my friends who were all queer that they better not let anyone steal his girlfriend while we’re out. And one of my friends jokingly said, “Oh, you should worry more about us stealing her than guys.”

[LAUGHTER]

KARIN: And we all started laughing. And then, I go, “Well, I don’t know. If I wasn’t dating you, I could totally date” and I said one of my friends’ names. And the whole room went silent.

[LAUGHTER]

KARIN: And everyone was like, “Well, okay.” And it was very much that was it. It wasn’t a big deal. It was a big deal for me because I have never realized that I felt that way. But I think for me, I always say that the thing is that because I do experience attraction largely based on emotional connections with people, it’s like “If I like you, I like you. Your gender is really irrelevant. If I like you, I like you. And if I don’t, I don’t.” You could be the hottest guy on the planet and if I probably don’t have an emotional connection with you, I’m never going to feel that spark. It’s just not there.

LEAH: Sure. Yeah. So, I want to ask you more about your former partner. But just here, I want to pause and ask have you ever been involved with somebody of a gender other than cis-male?

KARIN: No.

LEAH: But it’s something that you’re still interested in?

KARIN: Yes.

LEAH: Yeah. That’s exciting. There’s new territory to discover.

KARIN: Yes.

[LAUGHTER]

LEAH: Okay. So, let’s go back to the moment on the train station, whatever they call that, the platform.

KARIN: The platform.

[LAUGHTER]

LEAH: Is it okay if I ask you some logistical situations about how this works?

KARIN: Yes.

LEAH: Okay. So, was he also using a wheelchair?

KARIN: Yes. So, it took some negotiating. Yeah.

LEAH: Yeah. It probably wasn’t a super spontaneous moment.

KARIN: No. But that’s what’s awesome about dating another disabled person because we had had these long conversations about how everything would work. And that sounds really weird, but it was oddly comforting to me because I was like, “Oh, I can talk about this with you and you don’t expect my body to just work like somebody’s on an HBO show.”

LEAH: That’s huge.

KARIN: “You understand that my body doesn’t work that way.” Not that anyone’s body really does.

[LAUGHTER]

KARIN: But especially when you have a physical disability, your body just fundamentally doesn’t work that way. And it’s really hard to explain to somebody like, “I need help with everything.” I’ve reclaimed the word cripple, so I’ll call myself a cripple and so would he. And we had a cripple contest to decide who was more disabled and I won. I’m very proud of it.

[LAUGHTER]

KARIN: And I remember his mom walked in while we were Skyping. I’m trying to open cans of soda or something ridiculous and she asked what we were doing and we told her. And she looks at me and looks at him and she goes, “Did you just call your girlfriend a cripple?” And he goes, “She is.” And I go, “It’s okay. He is too.” She looks at us both like, “You deserve each other” and walks out.

[LAUGHTER]

KARIN: But I tell the truth. I think for me largely what is arousing in a relationship is being able to be fully myself. So, being able to have these conversations with him that were both very intimate and also very logistical like, “All right. So, we want to make out. How is this going to happen?” But being able to say like, “We can’t just expect it work like it does for non-disabled folks.” And that was very real and I think that that’s a fear I have of dating being somebody that doesn’t have some kind of disability is that as much as they can be understanding, they still think that it’s going to be the same as being with somebody who is non-disabled.

For me at least, there are just things logistically, positionally, I cannot do. I feel like already as a woman, there’s an expectation of what you’re supposed to be. And then, when you add to that disability and body size, you have to be super feminine to be considered a woman at all. I personally choose to be feminine because I think it does come from being desexualized, but also my way of being like, “No. I am a girl and this is how I identify.”

It’s really important to me, so yeah, I wear makeup and dresses every day even in quarantine. Yeah. I think that thinking about sex and things like that more than the actual act of sex because for me I don’t have much experience and even the experience I do have wasn’t really complete in a way.

LEAH: When you say complete, do you mean there wasn’t penetration or there wasn’t orgasm?

KARIN: Right. I’ve never had an orgasm. And I’m sure I can. I just never have. And so, for me, the most arousing experiences I’ve had in that regard, I’ve always been talking about things rather than actually doing things and maybe it’s because I’m a writer.

[LAUGHTER]

KARIN: And you have to win me over in my head before you can win me over anywhere else. It just always is. That’s just how I am. And I don’t think that necessarily has anything to do with my disability, I think it’s just my personality. I’m a very intellectual person. So, that part of me has to be intrigued because if I’m not, the physical stuff is just going to fall flat.

LEAH: Yeah. I get that. And I think you’re right. I don’t think that that’s a disability specific thing. There are a lot of us who need that piece of ourselves, that intellectual piece, to be satisfied before the next piece happens.

So, you mentioned before we started recording that you have cerebral palsy, that you have had some mental health issues, and that you’ve also dealt with an eating disorder. And I would be interested to hear anything that you’re willing to share about how each of those things has affected your relationship with your body and your sexuality.

KARIN: Sure. I spent most of my teenage years and 20s really hating my body. And one of the ways that I’ve started developing a more healthier relationship with my body was you’ve seen my selfies on Instagram, so it was through selfies and makeup and making myself feel beautiful and even dare I say it sometimes sexy, not for anyone, but myself. So, I take hundreds of selfies and don’t post all of them obviously.

[LAUGHTER]

KARIN: Yeah. There is a level of I have to be feeling myself before I can be in a relationship. And a lot of my feelings towards my body and I think specifically when thinking about my mental health and eating disorder and things like that were other people expecting my body to be a certain way for them and even in the sense of having a literal therapist say to me, “Well, of course, you hate your body. You’re in a wheelchair. I would hate my body too.”

LEAH: Oh my god.

KARIN: That was when I was in college studying social work. I want to work with people who have complex medical conditions and also mental health issues to help them get culturally informed services that are not going to retraumatize them because I had a physical therapist say to me, “You can’t gain the freshman fifteen because then no one will be able to take care of you” or something along those lines.

LEAH: Oh my god.

KARIN: So, I think my relationship with my body has always been very fractured. And a lot of finding my way back to being comfortable in my body was realizing that other people could find me attractive and that there was nothing wrong with that. There is still a part of me that when somebody finds me attractive, I’m like, “What’s your damage? Do you have a fetish?” Because we’re so taught disabled people aren’t supposed to be seen in that way and fat people aren’t supposed to be seen in that way. That when somebody does, I even sit there and I’m like, “But why?”

But I think largely exploring sexuality and seeing myself as desirable in some way both to myself and to others has been very healing in the fact that it’s like I’m not broken. I’m not defective. I am a woman. I’m an adult. I can be beautiful and sexual and all these things and it’s totally fine. And I think that these things have affected my relationship with my body and my sexuality in the sense that they delayed them because you asked me about my journey there. And I think a large part of why it wasn’t a thing was because I was so completely disgusted by my body that I was like, “Why would I want to learn pleasure in my body if I hate my body?”

And I think that a lot of healing had to be instead of being destructive to my body because my body frustrated me was finding ways to nurture my body like makeup and relationships and allowing myself to explore dating. And things like that has been a huge part of that process of integrating my body with my being as I’m a person and I am a body and it is okay. You don’t just have a body. You are a body. I think people say like, “Oh, you are not a body. You have a body.” It’s like, “No. Your body is very, very central in the way that you experience this world.” And if you want to deny all pleasure because you despise it which is I think what I went through for a large part of my teens and adult life, you’re not going to have a healthy sexuality because you’re like, “How could somebody want to be with me? I’m gross.”

You have to get to a point where now I’m like, “No. I’m not gross.” It’s not to say that I don’t have bad body image issues, I definitely do. But I also know the challenge that with men and say no. It’s totally normal for someone to say to you like, “Oh, you look nice” or “Oh, you’re pretty” or “Oh, I’m attracted to you” or what have you down that line, whatever people say. Although I will block people on Instagram who send me explicit messages because if you are a stranger, no I don’t want inappropriate pictures. No. Go away. No. But that being said, in a relationship, to be able to say like it is okay for somebody to see you as desirable.

LEAH: Yeah. So, let’s go back again to the relationship that you’ve had. How did the two of you negotiate sex?

KARIN: We didn’t all that many times because he was a fool and broke his foot right before I got to England.

[LAUGHTER]

KARIN: So, he didn’t end up living at school, so he would have to come up and visit me. And he wasn’t able to do that all that often. So, even though we dated for 11 months, we only got to see each other in person a handful of times. But it was very much like it was awkward. And I think I wished that I had taken more time to figure out what I liked and things like that. And the things we did do largely were not enjoyable for me because I didn’t know what I liked if that makes sense.

LEAH: Oh, it makes a lot of sense.

KARIN: Now I would do things very differently. And like I said for me, it’s more grounded in the foreplay than the actual. So, I realized that I need that mental stimulation and things like that. I can’t just be like, “Oh, yeah. Let’s hook up.” No. It’s never going to be something that I’m going to enjoy.

I also think there are also a lot in our culture about not wanting to disappoint the other person you’re with, so not wanting to say to somebody like, “I’m not enjoying this” or “This is making me uncomfortable.” And it’s interesting because I work now with people who’ve experienced sexual violence and a lot of the conversations are conversations around non-consent. And I’m not saying that that’s what I experienced because I was okay with what was going on, but also when I was uncomfortable, I didn’t how to be like, “No. This is not working for me.”

LEAH: Yeah. I’m sorry.

KARIN: And I want especially women, men and women and people of all gender identities, it’s not strictly a women thing, but I think girls specifically are told, “It’s about your partner. It’s not about you.” And it’s like, “No. It’s about you. You.”

[LAUGHTER]

KARIN: I realized that I was not into the more vanilla parts of things, that I was definitely more into kink and things like that. People think it’s funny because I have not really had a lot of sex, so they’re like, “How do you know that that’s what you like?” And I’m like, “You can just know. Just like you can know who you’re attracted to whether or not you’ve been in a relationship with someone of that gender.”

LEAH: Yeah. I was in a class with somebody who teaches kink and they said something that really caught my attention which was that often our kinks will show up as young as four and five years old. And we won’t recognize in that context because we’re babies. We’re little kids at that point. But if we look back from our adulthood knowledge of our kinks, we’ll see the seeds and the crumbs of it much earlier.

KARIN: Oh, yeah. Yeah. That I relate to that very much.

LEAH: So, you don’t have to have had experience necessarily to know what it is you want.

KARIN: Yeah. And I think it’s been a journey now of just figuring out what it is that I want in a relationship and things like that and in other things also being so in my relationships and being like, “These are my non-negotiables. This is my ground rules and these are the things that you have to know about me like straight up, day one, you have to know this.”

And I put in all my dating profiles that I’m in a wheelchair. And I’m in a wheelchair in all my photos because my whole thing is if that’s not okay with you, I’m not judging. But I’m not the girl you need to talk to because that’s never changing. And it took me a really long time to be proud to be disabled and now I am. And I’m not going to let anyone take that away from me.

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LEAH: Friends, let’s talk about Patreon. It has been quite an evolution over the last two and a half years. For a long time, I took cuts from the episodes and put them on Patreon for people who financially supported the show. But by mid-2020, that no longer felt right because I was hearing from listeners who said they wanted to hear the Patreon extras because the show was making such a difference in their lives, but they couldn’t afford to donate. It really doesn’t feel appropriate to withhold this material in exchange for monetary support. That’s not just what I’m about. So, from July 2020 through April 2021, I made all audio extras at Patreon free for everyone and that has worked well. I’ve been pleased to see that my Patreon support didn’t drop when you were supporting the show because you appreciate it rather than paying to get something in exchange.

And now, I’m evolving again. Instead of pulling clips out of the show for Patreon and keeping the main episode as close to 50 minutes as possible, I’m letting the conversations play out in full in the main episode. If my work is meaningful to you and you have a few dollars to support it each month, I will gratefully accept your patronage at Patreon. If you have more than a few dollars, consider donating extra in honor of women who need this material, but aren’t in a position to contribute. And I donate 10% of all Patreon contributions to ARC-Southeast, an organization that supports women in the Southeast United States to access reproductive services that are currently being legislated out of existence.

I appreciate every one of you whether you’re a client, a contributor, a social media follower or a silent listener. I trust you to know what’s right for you. Thank you for being here. You can find out more and become a community member at patreon.com/goodgirlstalkaboutsex. And if your finances are tight, but you still want to support the show, I would love it if you would take a screenshot of this episode on your phone and post it on Instagram. Tag me in your post and I’ll send you a personal thank you or send your favorite episode to a friend and invite them to chat about it with you. Use this show as a jumping point to deepen your own conversations around intimacy and sex. Now, let’s get back to the conversation.

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LEAH: So, you said that before you were with him, you hadn’t done any exploration to figure out what you like. What kinds of exploration are you doing now to figure those things out?

KARIN: I definitely will go on different sites and talk to people and roleplay and things like that, explore what I like and more in that again safe distance way.

[LAUGHTER]

KARIN: Like, “Okay. We can talk about all this stuff, but you can’t actually touch me.” And it feels much safer to me. I am dating. That’s a whole another thing, but it felt I should say much safer to do it in that arena where I felt like I had the power and I had the role. Because as soon as I meet someone and it actually does get physical, I lose all my power and that’s very scary to me. And so, I realized that I have a little bit of fear of intimacy and I have to work through that. And I’m working on it, but I’m also realizing that it’s okay to want those things. There’s nothing dirty, gross or whatever word you want to use about it, but it has to be on your terms.

I’m really a big advocate for consent in all areas of life which means I’m learning even to say to my personal care assistant when they’re helping me clean myself or whatever, “No, the way you’re touching me makes me feel uncomfortable,” which was something I never really realized I could do. And then, through my work in sexual and domestic violence, I realized like, “Oh, I have the right to consent to things too.”

It’s I think a really important conversation in disability especially because some of us aren’t given a lot of agency over our bodies. And so, that’s the other thing about physical exploration at least. It wouldn’t be something I could do by myself, so it’s never been something I’ve been comfortable enough within as a person outside of the person that I dated to do which is why a lot of it is very much an intellectual exploration of things. I’m not going to ask somebody to hand me a vibrator. That’s just a hard no for me because they’re going to look at me like, “What?”

And again, that goes back to the way we see disabled people as not having those desires. And I think I’m very interested in how the Puritans and puritanical culture still affects America today. And I’m like, I just think about the difference in England and the fact that people watch regular TV and they show nudity and sex. And here, we’ll show violence. It’s totally okay to watch someone decapitate someone, but oh my god, people are having sex, no. That’s just so interesting to me.

LEAH: Yeah, exactly. We’re taping this the week after the insurrection, the takeover of the Capitol. And there was a great meme that I saw going around today which was, “Social media is so busy policing nipples that they can’t spend time policing the people who are using this platform to plan an insurrection” which is just insanity.

KARIN: Yeah. Exactly.

[LAUGHTER]

KARIN: The female body is scarier.

LEAH: Yeah. You can replace them with male nipples and it’s fine, but you cannot show a female nipple.

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KARIN: Right. Not to be exclusionary to anyone, but because it is specifically even if you don’t identify as female, if your nipples are coded as female, they are not okay. And that is so interesting to me.

LEAH: Yeah. It’s ridiculous.

KARIN: No. It’s ridiculous, but it’s also fascinating. In my grad school in England, I never finished my dissertation because of what happened with my partner passing away, but I was doing my dissertation on disability and sexuality. And I remember at one point wanting to know something about fetish porn, but not wanting to look it up because I had never seen porn.

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KARIN: And telling my boyfriend to look it up for me and he was like, “You want me to look at porn for your dissertation?”

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KARIN: And I was like, “Yes.” He was like, “I need this in writing because I’m not getting in trouble for this with you later when you change your mind.” I was like, “No. I need to know if this is a thing. Go look it up and show me.”

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KARIN: I was such a chicken. I should have just googled it myself, but I was like, “No. I’m not.” But again, I think it’s very much coming from that American culture where that is very taboo and over there, it’s just not. And so, my friends would always tease me about how I didn’t even have to open my mouth for them to know that I was American because my attitudes towards certain things were just very different.

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KARIN: And I don’t want to paint people with the brush certainly, but I do think our culture is very different. We are fine with violence, but we are uncomfortable with intimacy. And then, we wonder why there are so many issues. I don’t know. It’s something that I would like to study more honestly because it’s very interesting to me.

But my dissertation was actually inspired by me watching TV and watching British Netflix and finding a show called The Undateables which is about disabled people trying to date. And I was like, “Why is it called The Undateables?” And I texted my boyfriend and some of my friends and I was like, “What is wrong with your country?”

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KARIN: And I was so mad about it. And I was like, “No. This is wrong.” The fact that this is the only representation of disability and sexuality I see on TV is in a show called The Undateables. I was like, “I am not undateable” and I got really mad about it. I think that there is this idea across cultures that certain people are undateable and I don’t buy it. I think anyone is dateable. You just have to find as Dr. Seuss says, “You find someone who matches your weird and that’s what we call love.”

LEAH: Yes, yes.

KARIN: And it’s my favorite quote.

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KARIN: But yeah, because that’s how I see love and that’s very much how it was for me with my partner. It was that. We weren’t perfect people, but we were perfect for each other.

LEAH: Yeah. So, when you look into the future, what do you hope for yourself in terms of relationships?

KARIN: I want to get married and have kids. And that’s scary for me to say out loud because for a very long time, I said, “I don’t want to get married. I don’t want to have kids. I don’t want those things.” But it was never that I didn’t want those things. It was always I was afraid I couldn’t have them. And it was easier for me to say, “I don’t want” than “Maybe I can’t have.”

And I still don’t know. I don’t know if I can have my own kids. I really don’t. I haven’t done enough research. Certainly, people with my disability do have kids, but I don’t know with the level of severity that my particular case is if it would physically possible for me to have a child. I just don’t know, but I also don’t know that it’s not. I just don’t know enough about it.

But yeah, I want those things. And I’ve been talking to someone for a couple of months now and it’s still long distance. But yeah though, that was new to get back into that and not feel like I was betraying the relationship I had before because of the way it ended. But yeah, I want to get married. I want to have kids. I want to have a relationship with somebody. I used to say that I wanted to find somebody who could overlook my disability and I said that to a friend. And she said, “That was gross.” And she said, “You don’t want to find someone who could tolerate you. You want someone who loves you for you.”

And I realized that that’s very real. And so, now I always say, “I want somebody who accepts the whole package.” It’s not, “Oh, I can deal with that.” I used to say, “I wanted someone who could deal with it and could deal with that.” And now, it’s very much, “No. I want somebody who sees me the way I am.” And it’s like, “You’re awesome.” I don’t know what that’s going to look like, but certainly, I haven’t given up hope even at 30 that I will find that with someone.

LEAH: I want that for you too.

KARIN: Thank you. Definitely, let’s say, that I’m open to it.

LEAH: Is the person you are currently talking to also disabled?

KARIN: Yes.

LEAH: And it sounds like that provides a level of comfort for you?

KARIN: Yes, but I didn’t know that when we started talking. It just came out at some point. And I was like, “Oh, cool” because I’m very open about my disability and we were talking about something and he mentioned he was in crutches. And I said, “Why do you use crutches?” And he said, “Oh, I have” actually the same condition that I have. But I hadn’t told him what mine was, just that I was in a wheelchair. And he’s like, “But I don’t tell many people that.” And I was like, “Oh, well, it’s cool because that’s what I have, so we’re good.”

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LEAH: So, I have one more question which is again a logistical question. You mentioned that you have help getting dressed and doing things like that and also that you wouldn’t want to ask a care person to hand you a vibrator. So, when you get into the bedroom with a partner, do you need to have a third person there to help and facilitate?

KARIN: Not if my partner is comfortable helping with the things that I need help with and that’s why you have long conversations with the person about, “Here’s what I can’t do. Can you pitch in and help with those things or no? Because if no, we’re going to have to figure out a Plan B because I’m not really comfortable with the idea.”

It would depend, but what I’m not comfortable and this is just me is somebody that I pay to take care of me being involved in that part of my life because that part of my life is very much mine. And I want to possess and own that part of my life because also I don’t know how to explain this other than saying it feels like asking for permission and I don’t feel like I need permission. It’s my body and I can do what I want.

LEAH: Yeah. Have you ever looked into sexual surrogacy?

KARIN: I’ve heard of it but it’s never been something that I’ve explored I think because I just go and meet people and explore it that way.

LEAH: So, I have a friend and she’s actually been on the podcast before. I can give you the link to her episode. One of the things that she does is she works as a sexual surrogate and sometimes that means working with a person who is disabled who wants to have a sexual experience directly with her. But sometimes it’s with a couple where both people have disabilities and she helps bring to them together, so they can have that experience together.

KARIN: That’s amazing. I love it. Yeah. But it’s definitely for me it’s all about the conversation and being with somebody that I feel like I can have a conversation with and where it doesn’t feel like I have to hide parts of my disability to make them less uncomfortable. I used to swear that I wouldn’t date somebody with my disability or with a disability at all which I realize was super ableist.

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KARIN: But I had a lot of internalized ableism, so we’re just going to own up to that.

[LAUGHTER]

KARIN: Because able-bodied people, non-disabled people tend to think it’s adorable when disabled people date each other. And I don’t want to be adorable. I have this rejection of being adorable in most contexts unless my partner tells me I’m adorable and then it’s cute.

[LAUGHTER]

KARIN: But that’s very different. But I don’t want to be infantilized as like, “Oh you’re so cute.”. I’m like, “Ew, no. I am not.”

LEAH: Yeah. Karin, this has been absolutely wonderful. Thank you so much for being so open. How can people find you online and follow your work?

KARIN: So, you can follow my blog at claimingcrip.com. And all my social are on there, so whatever your preferred social channel, you can find me on there.

LEAH: All right. Wonderful. So, Karin, thank you again. I really enjoyed talking to you.

KARIN: I enjoyed it too. Thank you.

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LEAH: That’s it for today. Good Girls Talk About Sex is produced by me, Leah Carey, and edited by Gretchen Kilby. I have additional administrative support from Lara O’Connor and Maria Franco. Transcripts are produced by Jan Acielo.

And I’m incredibly grateful for the financial support from Good Girls Talk About Sex community members at Patreon. If you’d like to support me in telling these stories and answering your questions, head over to www.patreon.com/goodgirlstalkaboutsex. You can find Show Notes and Show Transcripts at www.goodgirlstalk.com. To ask a question about your sex life, your desires or anything to do with female sexuality, call and leave a message at 720-GOOD-SEX.

And before we go, I want to remind you that the things you’ve probably heard about your sexuality are not true. You are worthy. You are desirable. You are not broken. I work with women just like you to reflect their true sexual nature back to them without the judgment, shame or fear that can get in the way of us seeing it for ourselves. As a coach and PJ party hostess, I will guide you in embracing the sexuality that is innately yours no matter what it looks like. I’m here to help you sink so deeply into your true sexuality that the version of yourself that was scared to speak up for her own needs feels like a mirage from another lifetime.

Until next time, here’s to your better sex life!

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